Hanging in there

Lisa has been doing remarkably well this week.  She has been to school every day.  Docs assume she may be doing so much better this time because her body is getting used to antibody...I think it's the painkillers.

We left the hospital after the first antibody treatment with no pain control.  This time we were wise....she takes pain meds every 4-6 hours and we are able to keep her comfortable and functioning.

I just finished reading my emails and realized we are already due back to St Jude the week after next...man, time flies.

A new week...at home;)

Yeah...we are home, again.  We got home Friday at around 5:30 and then proceeded to go North to visit Mike's mom.  Lisa was so excited about seeing Grandma Mac.  We had a nice time just hanging out and Lisa's pain seems to be less this second round of antibody.  She is only taking pain killers 2-3x's a day and is up and about and playing...yeah!
She'll have appts at U of M twice a week until we go back down to St Jude's.  If her scans continue to show her disease is stable she will be eligible for two more rounds of antibody.  No real way of knowing if this treatment is working or how much time we are buying her, but if she is able to bounce back and not continue to have pain, we are willing to continue the treatment.

Lisa has looked so good the last two days that the plan is to send her to school tomorrow.  Of course, when she heard this, she said she couldn't go because it would hurt her neck!  They learn fast, don't they!

Glad to be home!!

Course 2, Day 4 much smoother....and this course is complete

Course 2 Day 4 went very smoothly.  Lisa was very restful and calm when it was started.  Have no idea if it was from all the meds in her system the day before,  because it was  later in the day when we started, if it was the change in pain killer or skipping the premed antivan, but I was very happy that she was feeling little pain. We sailed past the 15 minute and 30 minute marks with no problems and at the two hour mark she asked to do a craft.  What an incredible change from one day to the next.  She breezed thru all four hours getting pain meds when needed and sleeping on and off.   It would be nice to know what the magic formula is but it continues to change which each dose which is what makes this so hard to do.

Lisa just stared at me as I did the "we made it past 2 hours happy dance"

Last night went pretty smoothly and we were able to keep her pain under control.  She did throw up once, but after that was fine.  She slept pretty well and did not even wake to the crazy fire alarm that went off at 6:30 am for a drill.  The staff is soooooooo lucky they were all behind the fire safe doors and I was exhausted because I'm not quite sure what I would have done to someone if I had got my hands on them;)

We are waiting to be released from inpatient.  For some unknown reason, Lisa's platelets fell and she needs to have a transfusion before they will sign us out.  From here it's back to the Grizzly house for the night, a day of rest tomorrow and then labs on Friday.  If everything goes well we will hopefully be flying out Friday.....keeping fingers, legs, toes and eyes crossed that we can get out on Friday and don't have to wait for a flight on Saturday.

Next steps will be to follow up with more labs on Monday with docs at home and determine if we will be doing this again for course 3 in a few weeks.

Course 2, day 3---long day...should we continue

Lisa's various reactions to the meds and the treatment she is receiving kept me up last night as I researched and questioned whether we are doing the right thing.  She is in so much discomfort and basically living her days in a sedated world that I'm having a hard time reconciling this with giving her a good quality of life.  I had made up my mind to ask doc today if they could cut antibody dose back this morning because perhaps it is just too toxic for Lisa.

Why I toyed with how to phrase the question, one of the docs came in this morning a proposed a more structured way to administer the pain drugs with the hope of keeping Lisa more comfortable thru the day.  I agreed as my mind did the tug of war of the benefits of continuing vs giving up.  If we can control her pain then giving her the antibody makes sense because it could give her a longer life, on the flip side, her quality of life is being compromised and so far she has already given up 6 weeks of life to this study.  Also, the effectiveness of the antibody is not known yet.  I have gotten different statistics from different people re: how much time this buys kids.  One person reported his daughter did well with this antibody over one year ago, another person reported that she knew that 6 of the first 12 patients in this study passed away within 18 mos of completing it.

I agreed with the doctor to continue and give it one more shot with the hopes Lisa would sail thru the day.  In my mind I told myself I would not allow them to give her the antibody until she was not sedated and sleeping. We began premeds at 9:30.  After giving her tylenol, 2 antihistamines, anti-anxiety and morphine, Lisa was still wide eyed and agitated.  The nurse honored my decision not to continue with the antibody until we had Lisa sleeping.  We gave her a second dose of morphine...still nothing...except she got a bit more agitated and insisted she wanted to get out of bed and eat.  She tried getting out of bed but could barely stand up with all the meds in her...somehow she managed to grab her box of cocoa puffs from the table next to her bed and start eating.  Really?  The girl is supposed hopped up on pain meds and she wants to eat?  After she finished with this distraction she kept asking for an owl I promised to get her from the gift shop once she went to sleep.  She would close her eyes for 5 minutes and then open them and tell me she had gone to sleep and wanted her owl.  We continued this game until about 1:00 when her regular doctor came to check on her.  We discussed our options and she decided the next best thing to do would be to change Lisa's pain med, to see if we could get a better response than with the morphine.  Lisa was highly agitated at this time and the doctor and I agreed that we before starting up again, we should take a little break and give the drugs a chance to wear off.  I took Lisa her for a walk outside in her wheelchair and we went to the gift shop to get the owl.  I was certain the fresh air and sunshine would  knock her out.  Hahahahahahahahahahahahahahaha.  Oh, she closed her eyes once or twice, but this girl is stubborn.  Even after she got the owl, she still wasn't going to sleep.

Once we returned to the room it was close to 2:00.  Had I let them start the antibody on time today we would be finishing up at this point.   I wonder what I had gained with the approach I took....for all the agitation and frustration we went thru we could have just put her on the antibody and dealt with the same amount of screaming and been done with the treatment!  How was I to know that Lisa was going to be so sleep resistant??

We had to start all the drugs over.  We were certain with all the screaming she had done and another round of drugs, Lisa would just collapse in exhaustion.  We got all the drugs going again and at 3:00 when we were ready to run the antibody, Lisa was still awake.  Admitting defeat I told the nurse to just go ahead and run it, at this point could it get any worse?  Sooner or later Lisa would have to tire out, Lord knows I was exhausted.  It took the drugs, a bit of force, and a bit of being the "No" mom repeating over and over again "No, you can't get out of bed" "No, you can't take your tubes out" "No, you can't go to McDonald", "No, you can't go for a walk"  before Lisa finally fell asleep at 4:15.  Her body was already so agitated and tired from the rest of the morning that when the antibody started running her stats barely changed and we didn't notice a big change in attitude, cause really how much more cranky can one get?

She slept until about 7:00, but every time a nurse came in to take her vitals she fussed and screamed.  She has been resting most of the evening but is easily agitated.  We have one more day to get her thru this course and then hopefully we will be cleared to come home this Friday.  I hate wishing days to go by quickly especially knowing our days are numbered, but I honestly cannot wait for tomorrow night to be over.

I pray and pray that tomorrow will be an easy day and that once all the pain meds where off Lisa feels good and can go back to walking and eating and smiling and not have to rebuild up her strength like after course 1.

Long day...day 2, dose 2 of antibody HU14.18

Unfortunately, today did not go well.  Lisa had lots of pain.    She was sedated, but not asleep when the antibody began to run at 9:30am. At the 15 minute mark she was restless and uncomfortable; and, once again, this pivotal time set the pace for the rest of the treatment. Her vitals went crazy and she started fussing. We got the oxygen going and she settled down a little bit but was obviously in pain.  As the time ticked by, the pain got worse...at the one hour mark she was crazy with pain and they gave her a second dose of morphine. Hour two was filled with lots of screaming and tears and I tried to wrap my brain around how much pain she must be in that she was still bolting upright even after the second does of morphine had kicked in. Hour three was a bit better and she seemed to get a bit of rest in between her waves of pain.  The fourth hour was excruciating to watch (and I'm sure to feel). Lisa was inconsolable and I was mentally sending up prayer after prayer to God and every saint I could think of and sending Mike a  "get plane ticket, come now" thoughts.  Towards the end of the fourth hour, the rash that appeared yesterday, reappeared with a vengeance.  Instead of just dots, she also had the color pink traveling up her body; just looking at her made me itch. Poor thing; she was miserable as she scratched and cried. The doc on call prescribed Zantac (say what?! it's normally used for reflux but apparently has great antihistamine blockers....who knew?) and it helped calm the rash down, but not the pain.  She continued to be in and out of pain for the next two hours even though the antibody had finished infusing.  At about 3:15, she finally drifted off to sleep and continues to sleep almost two hours later.  Thank God.

She has two more days of antibody for this round and if it's going to be like today, it will be very tough for us to get through.  I can't imagine the strain this puts on the rest of her body...heart, lungs, etc.  It's a very big shock to her system.  I pray that the time we put into this is worth it and improves not only her quality of life, but her quantity.

Please continue to pray...the days are long when a child is in pain and you can do nothing to help them.

Power of Prayer

It is nearly 6:00 here today and so far so good.  Once the first hour was over, Lisa remained stable for the rest of the day.  She gets pain meds every four hours and this seems to be keeping her comfortable.  At 4:00, she sat up, asked for water, told me she felt fine and went back to sleep.

I pray and hope we continue on this peaceful path. She is a wonderful little girl and truly a fighter.  I continue to cross fingers, toes and legs and pray constantly that the next few days and recovery at home go smoothly and her pain dissolves and her cancer retreats.

Thank you all for praying!

1 hour into second antibody course...things now peaceful

Thanks to all of you out there throwing prayers our way.  They are working.  Lisa was infused at 10:06 this morning.  She was doped up on morphine and ativan when it started running.  At the 15 minute mark she started coughing, I noticed her face looked mottled and splotchy.  I called for the nurse...the next 10 minutes raised by as her her heart rate jumped, her oxygen fell.  She was hooked up to oxygen and things started to settle down.  She "slept" thru it all.  At the 1/2 hour mark she was still zoned on the drugs and her stats stabilized.  At the one hour mark, she continues to "rest" and does not seem to be feeling discomfort...yeah!! I hope it continues to go this smoothly.  Please, please, please God let her feel peaceful and pain free.

10:06 am...second antibody course started..please pray

They just started infusing antibody...next 1/2 hour will be telling on how Lisa will handle this...please pray for strength and comfort

THIS is the St Jude everyone raves about

All of Lisa's scans and test have come back showing her disease has not gotten worse which is great news.  It also means we can continue with antibody round 2.  Given all the pain Lisa was having, the doctor actually seemed a bit surprised that Lisa's disease remains stable;  the last patient to go thru this dosage of antibody had progression of disease so he was dropped from study.

Lisa continues to have pain specifically in her hands an feet.  Having an extra week has helped and she is doing better and even managed to be pleasant for a good part of the week, but the pain is still there.  It is with much apprehension that we enter round two of this antibody.  Neither the doctor nor the neurologist we saw for pain could say whether this next dose would be as bad as round 1 or if the nerves were already so frazzled that the pain would be less.  They also could not guarantee that it would not cause long-term nerve damage.  Based on prior patients, the doctor "thinks" that the symptoms should be less this time.  Becasue Lisa has shown improvement this week, she also "thinks" that there won't be long-term nerve damage...but there are no guarantees.

Lisa is the first patient at this dose level to have the amount of pain she did for the length of time she did; because of this, six more slots will be added to study using this antibody level to document other patients' reactions.

So, after spending a week milling around Memphis, we were admitted as inpatients tonight in preparation for the antibody tomorrow morning.  Finally, I have found the St Judes everyone raves about.  We are in their new building and on the floor where bone marrow transplant is done. It is NICE.  All the patient rooms are single rooms with their own bathrooms.  They have the normal hospital bed, tv with dvd along with PLEASANT staff, big windows, a couch bed, lazy boy chair, built in cabinets and a door that leads right into a parents room.  The parents room has its own couch bed (they offered to move a FULL size futon in if I chose), lazy boy chair, table, side table, built in closet, computer desk, tv with working remote and dvd player AND its own bathroom including shower.  It's heaven!  I know, easy to please!  I really hope Motts new hospital includes these type of accomodations.  You would think that they took the best of the best when building the new hospital and the features here at St Jude's building are very nice and make a hard situation much easier...THIS is the St Jude everyone raves about!

Please send up a few extra prayers the next few days that Lisa's pain in manageable and that she is able to stay strong and  continue forward.

Fun in Memphis

Well...thanks to Aunt Julie and cousins Mitch and Alyssa we survived the weekend and had LOTS of fun.  Lisa did really well on Saturday and required no pain meds at all, she even ate 3 meals.  Her cousins kept her busy and laughing and it was wonderful to see her feeling so well.  The doctor had asked that I try to get her off the pain killers and this was a great first step.

Sunday she did pretty good, but started to fade towards the evening.  That night she was pretty agitated and required pain meds twice.  Monday she was a bit groggy and was doing fine until her physical therapy appt.  She was not cooperative at all.  We even tried to have Mitchell and Alyssa coerce her into participating, but it was a no go.  Once the therapy session was over, Aunt Julie and the kids headed home and Lisa took her pain meds and slept for 4 hours.  She was feeling better afterwards and we took a shuttle ride to Walgreens for some items.

Today, I caved and gave her her pain killer at 10:30 in the morning. She was miserable and after the one clinic told us we had to reschedule our appt because we signed in 10 mins. late (yah, like we don't sit around waiting on them all the time!) I couldn't take any more aggravation.  I gave her the meds.  They kicked in and she was FINALLY in good spirits and cooperative with the head doctor here.  The doctor was so pleased she said that if Lisa looks this good on Thursday we will  most likely go ahead with the antibody on Saturday.  I made sure to tell her that it was drug induced happiness and she seemed to be okay with that.  The thinking is that Lisa's nerves are already on alert so the second antibody shouldn't be as shocking to her system.  There still is some concern about her bowels....even though she has been taking laxatives the last 4 days, nothing has "happened" down there since we got to St Jude over a week ago.  So far she isn't having any symptoms, but they are still keep an eye out for a bowel obstruction.

Holding my breath and saying lots of prayers that this is all worth it and she will bounce back!

Here's a little video we put together of our adventures in Memphis this weekend.

St Jude...be here a little longer...possibly

It's been a bit of a trying week.  Lisa has been hit and miss with her moods, generally most of her meanness is directed at the doctor, poor woman.  Lisa is really trying and even told of the few of the workers they are her friends which is wonderful to see, however, by the time she sees the doctor she's usually tired and uncooperative.  Not sure why, but it could be the long wait for the doctor and the timing of the appt which is usually at the end of a pretty full day of tests.

I had a few anxious moments this week with test results, but so far everything has come back as stable disease. There was some concern about the cat scan because Lisa's bowel is dilated...surgeons were cconsulted and because she is  asymptomatic, they feel that at this time there is nothing to be concerned about. They have given me a list of symptoms to look out for which would indicate that she has an obstruction in her bowel.   Her MIBG scan showed something questionable on back part of her left leg, so they rescanned her legs today. Radiology doctor who read the scans concluded  that it is not neuroblastoma again supporting the finding that she has stable disease.
Her doctor here is worried about her gait and difficulty walking. The doctor has scheduled an MRI of the spine and brain for next Wed. We are holding off on antibody until MRI is done and hoping that the extra time will get Lisa back to full strength and sleeping, walking and pain free before starting second round of antibody.

This means we get the weekend off from appts, but we will still be here at St Jude.  Thankfully, my sister-in-law Julie, who lives in Alabama, had already planned to come visit with her kids and keep us company for a few days.  While they won't be able to help us in ICU, they should be the perfect antidote for Lisa's aches and pains and hopefully get her feeling better.  She is so excited to see her cousins Mitchell and Alyssa.  We're hoping to finally make it to the zoo! Although with it still being in the 90s, I'm not sure what animals will be out.

If MRI does not show anything concerning and we proceed with the next round of  antibody we will be tacking on some extra days to our visit here.  Original return date was Oct 15...if we do the study, we most likely won't be returning home until. after Oct 19.
 
On another note, we would like to thank everyone who participated in the auction for the Michigan vs Michigan state tickets.  The winner of the auction was Ryan Tobin with a final bid of $310.  The money has been given to C.S. Mott Children’s Hospital/University of Michigan. Congratulations Ryan...you better be cheering for the Wolverines!!!  GO BLUE!

Back at St Jude

Well, we flew back to Memphis today.  Things went off without a hitch until we tried checking into the Grizzly Hotel at St Jude.  They were overbooked so they sent us off campus to the Crowne Plaza. It's still all paid for by St Jude and they provide a shuttle, it's just very inconvenient getting back and forth, it's not very kid friendly, the beds are lumpy, the room not so clean, it's noisy and you it smells a bit funny (could be the exhaust from the freeway).  But we'll make do. 

We also had some difficulty getting a prescription filled which kept us hanging around campus for an extra hour.  Waiting in the pharmacy we met another family whose little boy is in remission from neuroblastoma.  He's younger than Lisa and was eligible to receive both MIBG and antibody treatment as part of his initial protocol.  The mother did say he had some residual pain from his antibody treatment, but nothing as long as what Lisa has experienced.  We have scans tomorrow and Thursday and don't meet with the doctor until Friday; it will be interesting to hear what she has to say about Lisa's pain.

Surprisingly, once we got to the hospital, Lisa perked up.  She was actually "hopping" on some circles and counting them while we waited for the prescription.  Not sure if it was the visit from Grandma this afternoon, the hospital air, or all the prayers being offered up  but it was a wonderful change of pace and we had a very enjoyable evening which we finished up with eating pizza in bed!

Keep praying, keep hoping, keep believing!

Online Auction---Bid on Michigan vs Michigan State tickets

Lisa continues to be the trooper.  She went to school today and went home with Ms. Lisa after...as usual, she ate a big lunch with her buddy (Ms. Lisa must have a secret recipe for mac and cheese!) and they played and enjoyed each other's company.  She still is taking pretty long naps in the afternoon and is frequently experiencing pain in her legs and hands.  Her doctors at Motts are pretty convinced it is from nerve pain which is a side-effect of the antibody she received.   She is scheduled for scans starting Wed at St Jude and these should let us know if the cancer is stable or growing.  We are giving her pain meds on a regular schedule to make her more comfortable and help her sleep thru the night.

In our efforts to do something we have control over, something positive, we are having an online auction!!! Up for bid are 2 Tickets in Section 37, Row 75, Seats 1 & 2 to the BIG GAME in Ann Arbor, MI on October 9, 2010 between University of Michigan Wolverines and Michigan State Spartans. These are GREAT seats in the end-zone. Included in the auction is an autographed football signed by University of Michigan football stars Brian Griese, Charles Woodson and Steve Hutchinson.

To bid, click here.  (You will need to login with your facebook account or setup a free GiftBerry account to take part in the auction.). The highest bid wins and the funds will be donated to C.S. Mott Children's Hospital for research relating to neuroblastoma, a pediatric cancer of the central nervous system.

Be sure to pass on the link for the auction to any family or friends you think may be interested.

Thanks!